Welcome

Welcome to the POZ Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and
others concerned about HIV/AIDS. Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the
conversation yourself by registering on the left side of this page.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive
and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a
username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own
physician.

All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators
of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ community forums.

We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please
provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are
true and correct to their knowledge.

Author
Topic: Long term Survivors (Read 7080 times)

I found this article that stated back in the 90s that most long term people didnt take the azt that Doctors wanted us to. I did not take or my Buddy. I was wondering if any of the long termers did on here? Also I would like to know where i fit in here age wise in the long term section.Thanks

RWR, I removed from your post the rest of the link that included a blocked URL.

The website you linked to is a denialist website and we do not permit denialist links here, nor do we permit them any type of platform for their dangerous propaganda. These forums are a denialist-free zone and we enforce that rule without exception.

Posting denialist propaganda or links is a bannable offense on this website, so please do not do it again.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Thanks Miss Philicia,I am 56 and 26 yearsAids/hiv I guess i do not know what a denialist site it. It was a survey of 8 Long term surviors and what they did to make it. I would like to'knoe why some of us have wasting some has lipo while others are fine after 25 Plus years.

I took AZT for 9 months back in the very early 90s. Although it made me puke constantly, very anemic, and afraid I might die before my partner (who was much sicker at that time and in a clinical trial), I credit AZT with keeping me alive until better drugs (like ddI, zerit, kaletra, sustiva) came along.

This forum is a safe place for long-term survivors (LTS), defined as people living with HIV who tested positive for the virus before the advent of highly active antiretroviral therapy (HAART) in 1996.

being a LTS is not so much about chronological age; but about when you lived and when you were diagnosed (and what treatment you might or might not have had). Most people who post in this section range from their 40s to their 70s. Although HIV itself can cause lipo and wasting, often those problems are side effects of some of the earliest meds (like zerit for one) that LTSs might have taken.

oh, and AIDS denialists are those who either claim that HIV does not lead to/cause AIDS and/or that don't believe that HAART is the only thing that stops HIV.

Logged

leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

I took AZT for a few months, back in the day... 1991 or 1992, I think. Horrible drug. What I remember most is (1) the fatigue, and (2) the smell -- my body actual smelled differently when I was taking AZT. Kinda hard to describe.

RWR, regarding this question of yours: "I would like to'knoe why some of us have wasting some has lipo while others are fine after 25 Plus years. " ?

I think the answer is:

Everyone reacts differently to different medications. Not everyone encounters the side-effects listed for every medication, even non-HIV medications.

Earlier medications like AZT had some nasty side-effects, like lipo, or kidney stones.

Everyone reacts differently to the HIV virus, in that some people's immune systems react better to control HIV for longer than others.

Logged

"Life in Lubbock, Texas, taught me two things: One is that God loves you and you're going to burn in hell. The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love." - Butch Hancock, Musician, The Flatlanders

I really didn't have any side effects from AZT, excepting for sporadic headaches (which I've often gotten from other HIV meds too), at least nothing memorable after the first month.

RWR, I also have lipoatrophy from years of Zerit (ddi) and it was diagnosed as "stage 3" I think 4 is the most severe. I've had Sculptra injections in my face, but my arms and legs are still very noticeably veiny.

But why do some have some issues and others don't is simple. Every person's body is different, all of us with are on various drugs at different times for different periods in various combinations. Genetics come into play at least partially with something like lipo, etc.

I actually liked those big ol' chalky ddI tablets. I used to crush them up, with a mortar and pestle, for Randy and mix them with various liquid to "cover" the taste. By the time I took them, I just put them in my mouth and crunched them up. Interestingly enough, I actually continued to take ddI until two yrs ago, although somewhere through the yrs it changed into a regular capsule called videx ec

It was the liquid Kaletra that I hated that made me not be adherent; however, what I really, really hated was that liquid norvir - ethanol-based it was truly vile medication that tasted like gasoline.

there are times thinking about the "old" medications, that I'm really amazed at how much they changed. Lower doses, easier to take. The changes in ddI and Norvir have been really astounding - not to mention that dosage of AZT being so radically changed.

if you hover over the picture there at photobucket, a menu will show up. click where it says direct link, and it'll copy the URL to the pix.

then here at AM, click on USER over there on the left, then click on FORUM Profile. Click "Specify avatar by URL". right click in the URL box, paste that URL. then click "change profile" at the bottom and your pix should show up.

Logged

leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

I took AZT for 9 months back in the very early 90s. Although it made me puke constantly, very anemic, and afraid I might die before my partner (who was much sicker at that time and in a clinical trial), I credit AZT with keeping me alive until better drugs (like ddI, zerit, kaletra, sustiva) came along.

I'm 50 now, been poz 27 years, and lived with AIDS for 20+ yrs.

this is the description from LTS sectionbeing a LTS is not so much about chronological age; but about when you lived and when you were diagnosed (and what treatment you might or might not have had). Most people who post in this section range from their 40s to their 70s. Although HIV itself can cause lipo and wasting, often those problems are side effects of some of the earliest meds (like zerit for one) that LTSs might have taken.

oh, and AIDS denialists are those who either claim that HIV does not lead to/cause AIDS and/or that don't believe that HAART is the only thing that stops HIV.

46 years old, living with this virus for 25 years and survived the AZT years. I think it was the late 80's and I debated with each dose whether to stop taking it or not. My ubber best childhood friend also was having issues with quality and quantity issues and he decided to stop taking it.

Of all my AIDS deaths, his was the most horrifying for me and I continue to think of him daily. I somehow managed the terrible issues of this treatment convinced something better was coming.

Can't say anything about AZT or other early drugs. I was one of the ones who didn't seem to progress...even though mine is mixed since I am classified as having AIDS since I did develop Thrush around the time I tested positive. But it disappeared and nothing else happened.

I do know how sick my friends got who did take those meds. Losing weight, no energy, etc., was always afraid of when I'd have to go on them.

Can't say anything about AZT or other early drugs. I was one of the ones who didn't seem to progress...even though mine is mixed since I am classified as having AIDS since I did develop Thrush around the time I tested positive. But it disappeared and nothing else happened.

I do know how sick my friends got who did take those meds. Losing weight, no energy, etc., was always afraid of when I'd have to go on them.

Dean.....lol I didn't come down with full blown aids until 1997, that was when I had to stop working, then in FEB 1998 I got my ICD9 AIDS diagnosis, and then got my Teamsters Pension shortly after that date

so form 87 it took about 10 yrs before it turned into AIDS, around 97 or 98 .......

all of those early meds really did nothing to stop it, but only slowed it down.....I was very lucky to have good Ins. and a very decent Job back then

« Last Edit: June 29, 2012, 08:27:11 PM by denb45 »

Logged

"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

When we look at the early use of AZT we do need to remember a few things that are never mentioned in the "AZT = poison" meme.

The initial trials used much higher doses than later became standard prescription levels.

Early access to AZT was often for people who had multiple AIDS defining conditions in an era when treatment of opportunistic infections (OIs) and opportunistic cancers was very experimental and often ineffective.

AZT was introduced as a monotherapy (there was nothing else around) therefore its effectiveness was always going to be short-term.

I was one of the second wave to take AZT. My t-cells (CD4s) were a bit higher when I started and I had only minor OIs. It gave me a huge boost for about 8 or 9 months. I continued taking it for several years adding in ddI and ddc.

I really don't think I would have made it through without the extra time AZT bought for me.

I not only took AZT, it prevented our apartment from getting burgled. Seriously. Back then they had us taking it around the clock, and I remember one night our alarm went off about 3am to take a dose. I think I heard a sound or something, anyway I stumbled, half asleep out into our living room and found the door wide open, the cats gone and the only thing missing was a cheap plastic wrist watch that was laying out on a table.

Whoever it was must have thought he'd been caught! I wish I could have seen his face! We found the cats cowering outside and brought them home and got a new lock put on the door by the landlord the next morning.

I'd forgotten that story. The things you remember...

Logged

KK--I distrust morning people. I suspect they setup the rules of life while the rest of us slept.

HI this is my first postI am from New ZealandI have been hiv+ since 1987 I was diagnosed april.. Dunno how many drugs or wot they were.. most are horrible.. I DO have nerve damage n my feet and hands now..makes it painful to walk and do stuff.....I lasted 10 yrs til meds well 5 months off ten years....I have had body fat displacement and the thickening back of the head but not too bad my weight ballooned as well up to 100 kilos ive never felt so crap as then,.... i jus wanted to die.. Im still here lost the weight...89 kilos now,, took a few yrs to get it off..I never thought 25 yrs later Id still be hereall my friends have gone